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Early thinking palliative care for people with Parkinson's disease : A thematic synthesis based on a systematic mixed-methods review

Garon, Michela ; Weck, Christiane ; Leta, Valentina ; Dijkstra, Bauke W. ; Muente, Catharina ; Gentile, Giovanni ; Trivedi, Dhaval ; Groot, Marieke M. ; Lorenzl, Stefan and Odin, Per LU orcid , et al. (2025) In Journal of Parkinson's Disease 15(4). p.710-758
Abstract

Background: Parkinson's disease is a progressive neurodegenerative disorder. Awareness and the evidence supporting the merits of palliative care (PC) approaches to people with Parkinson's disease (PwP) are increasing. Objective: This review aimed to address four key questions related to PC for PwPs and their caregivers: i) What are the indicators for timely access to PC? ii) When should PC be introduced? iii) What are the current care models for providing PC? iv) What are the barriers and facilitators at the organizational level? Methods: A systematic literature search was conducted in PubMed, CINAHL, Cochrane, EMBASE, and MEDLINE (2006–2024). Six reviewers independently screened abstracts and full texts, and thematic synthesis was... (More)

Background: Parkinson's disease is a progressive neurodegenerative disorder. Awareness and the evidence supporting the merits of palliative care (PC) approaches to people with Parkinson's disease (PwP) are increasing. Objective: This review aimed to address four key questions related to PC for PwPs and their caregivers: i) What are the indicators for timely access to PC? ii) When should PC be introduced? iii) What are the current care models for providing PC? iv) What are the barriers and facilitators at the organizational level? Methods: A systematic literature search was conducted in PubMed, CINAHL, Cochrane, EMBASE, and MEDLINE (2006–2024). Six reviewers independently screened abstracts and full texts, and thematic synthesis was applied to develop analytical themes. Reporting followed PRISMA guidelines. Results: Out of 894 studies, 70 were included. PwPs were infrequently referred to PC services, and while several referral criteria were identified, no consensus emerged. Barriers to accessing PC included insufficient information, inadequate education, difficulties determining referral timing, limited home-based care options, inconsistent provider support, and disparities linked to socioeconomic and cultural factors. Facilitators included improved care coordination and education for PwPs, caregivers, and healthcare providers. Effective PC models were identified, including home-based, hospital-based, and community-based approaches, which improved quality of life and reduced healthcare costs. Conclusions: Establishing consensus on referral timing and criteria is essential for integrating PC into Parkinson's disease care. Overcoming barriers requires enhanced education, better care coordination, and targeted interventions to address disparities, ensuring comprehensive, patient-centred care for PwPs and their caregivers.

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organization
publishing date
type
Contribution to journal
publication status
published
subject
keywords
health services accessibility, needs assessment, palliative care, Parkinsonian disorders, Parkinson’s disease
in
Journal of Parkinson's Disease
volume
15
issue
4
pages
49 pages
publisher
IOS Press
external identifiers
  • pmid:40320755
  • scopus:105009381581
ISSN
1877-7171
DOI
10.1177/1877718X251321110
language
English
LU publication?
yes
additional info
Publisher Copyright: © The Author(s) 2025. This article is distributed under the terms of the Creative Commons Attribution-NonCommercial 4.0 License (https://creativecommons.org/licenses/by-nc/4.0/) which permits non-commercial use, reproduction and distribution of the work without further permission provided the original work is attributed as specified on the SAGE and Open Access page (https://us.sagepub.com/en-us/nam/open-access-at-sage).
id
e8b3edcb-e08b-4450-ae5e-7e26b8d12036
date added to LUP
2025-12-29 15:12:35
date last changed
2026-01-26 18:46:00
@article{e8b3edcb-e08b-4450-ae5e-7e26b8d12036,
  abstract     = {{<p>Background: Parkinson's disease is a progressive neurodegenerative disorder. Awareness and the evidence supporting the merits of palliative care (PC) approaches to people with Parkinson's disease (PwP) are increasing. Objective: This review aimed to address four key questions related to PC for PwPs and their caregivers: i) What are the indicators for timely access to PC? ii) When should PC be introduced? iii) What are the current care models for providing PC? iv) What are the barriers and facilitators at the organizational level? Methods: A systematic literature search was conducted in PubMed, CINAHL, Cochrane, EMBASE, and MEDLINE (2006–2024). Six reviewers independently screened abstracts and full texts, and thematic synthesis was applied to develop analytical themes. Reporting followed PRISMA guidelines. Results: Out of 894 studies, 70 were included. PwPs were infrequently referred to PC services, and while several referral criteria were identified, no consensus emerged. Barriers to accessing PC included insufficient information, inadequate education, difficulties determining referral timing, limited home-based care options, inconsistent provider support, and disparities linked to socioeconomic and cultural factors. Facilitators included improved care coordination and education for PwPs, caregivers, and healthcare providers. Effective PC models were identified, including home-based, hospital-based, and community-based approaches, which improved quality of life and reduced healthcare costs. Conclusions: Establishing consensus on referral timing and criteria is essential for integrating PC into Parkinson's disease care. Overcoming barriers requires enhanced education, better care coordination, and targeted interventions to address disparities, ensuring comprehensive, patient-centred care for PwPs and their caregivers.</p>}},
  author       = {{Garon, Michela and Weck, Christiane and Leta, Valentina and Dijkstra, Bauke W. and Muente, Catharina and Gentile, Giovanni and Trivedi, Dhaval and Groot, Marieke M. and Lorenzl, Stefan and Odin, Per and Konitsiotis, Spyridon and Pedrosa, David J. and Fotiadis, Dimitrios I. and Meinders, Marjan J. and Bloem, Bastiaan R. and Schrag, Anette E. and Grover, Laura and Taba, Pille and Ray Chaudhuri, K. and Antonini, Angelo and Paal, Piret}},
  issn         = {{1877-7171}},
  keywords     = {{health services accessibility; needs assessment; palliative care; Parkinsonian disorders; Parkinson’s disease}},
  language     = {{eng}},
  number       = {{4}},
  pages        = {{710--758}},
  publisher    = {{IOS Press}},
  series       = {{Journal of Parkinson's Disease}},
  title        = {{Early thinking palliative care for people with Parkinson's disease : A thematic synthesis based on a systematic mixed-methods review}},
  url          = {{http://dx.doi.org/10.1177/1877718X251321110}},
  doi          = {{10.1177/1877718X251321110}},
  volume       = {{15}},
  year         = {{2025}},
}